Life with Phoebe Heaven-Side

It Peeled Away! (Jan. 10, 2012)

9:42 am: This very moment I am watching Phoebe with her physical therapist. The left side of her body is weaker than the right because of the incision they made through the area of the brain that sends signals back and forth between the left and the ride sides. Right now they have her sitting up on the edge of the bed and she is encouraged to pick toys out of a bucket on her left and hand them to her brother Deacon. She is doing great, just a bit wobbly and you can tell her body wants to lean to the left. Now they have her standing, fully supported, but trying to put one foot in front of another. She is able to do this because her SODIUM IS AT 140, and her EVD tube (that drains her Cerebral-spinal fluid) was taken out this morning! She still hasn’t had a real sleep, and since she is being given so many steroids to reduce brain swelling, they are not concerned because this is typical of that. But she is over-tired nonetheless.

Phoebe and daddy on vacation at PuertaVallarta (2010)

I got several hours of sleep last night at Ronald McDonald House and had lots of boy snuggles in bed this morning before we came to the hospital and that was wonderful! This afternoon the Occupational Therapist will come to work with her on eye tracking and motor skills etc. So, it seems that we are in a much different situation than we were just yesterday. What a difference a day can make! Thank you all for your ceaseless prayers for Phoebe, we are reaping the benefits of them each day. Today, we ask for prayer that her left side would strengthen, that her brain would do what it needs to do on it’s own without the EVD tube, and that her sodium level stays consistent. She is still limited in her fluids until her sodium has been stable for a length of time, and she is very thirsty. Today is a good day!

4:40 pm-It Peeled Away: Phoebe is doing well. Her sodium is 137 and moving up very gradually which is exactly what it is suppose to do so thank you for all those prayers! She is deliriously tired though, sometimes to the point of hallucinating, so please pray this little girl will get some sleep. Now that her sodium and fluids are more regulated they are considering giving her a sedative to help her sleep later tonight, but it would still be best if she fell asleep on her own. The really incredible news, is that when our neurosurgeon met with us, he described the tumor during surgery as “PEELING AWAY” from the brain. Now if you have read our earlier posts about several people getting the words for the tumor to “fall away” in prayer as they prayed for the surgery, you will understand the significance of that statement. It was a goose-bump moment for sure! Thanking God for a good surgery report!

Right now Phoebe’s temperature is 102.3 and it needs to come down. Since surgery Phoebe has sustained a fever daily and we need to see that resolve. She has been tested several times through blood cultures to see if there is infection and so far all tests have come back negative. It is possible that she could still have residual blood in her cerebral spinal fluid that could be causing fever which will resolve with time. Praying for a good night of sleep for Phoebe..tomorrow we have another big day of Physical Therapy and OC. Thank you for continuing to pray us through.

8:28 pm-141: Sodium at 141! She’s doing great on the slow rise for the sodium levels but is a bit dehydrated because her fluids have been limited. She still has a fever of 102.3 that needs to come down. The pathology report for her tumor comes back on Thursday and then we will now the game plan for her treatment. Please pray for a good report!! I know the posts today have been limited, most of my time has been spent enjoying my girl who is talking, (even trying to walk!) singing, awake, and not in any imminent danger. It has been a lovely day around here!

11:32 pm-The Pendulum Swing: We are at 148 for sodium. She spiked 6 points in the last 2 hours and that is too fast. The sodium needs to STAY PUT and level out. She has a fever of 102.7 that isn’t letting go and if her sodium keeps rising she will slip again into Diabetes Insipidus. If that happens, they will have to put in another IV (since they took them all out today) and restart her on the Vasso Pressin hormone. Please pray for it to stop!

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About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th.
A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle".
We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms.
We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated.
Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope.
Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.